What is Endometriosis?

Endometriosis is a chronic condition that affects women from teenage years through to the menopause. Tissue similar to the lining of the womb is found outside the womb, usually behind the womb or on the ovaries, causing pain or scar tissue (presence of endometrial glandular tissue outside the uterus). Rarely, endometriosis can be found in distant places such as the lung, nose or on scars. Endometriosis is often called a disease of the modern age as it tends to affect women in their 20’s and 30’s, as child bearing often occurs at a later stage in women’s lives nowadays. However, it can occur at all ages after puberty.

How common is endometriosis?

It is difficult to know the exact incidence and prevalence in the general population, as symptoms can be so diverse. However, endometriosis is found more commonly in certain situations. 1 in 5 women being investigated for infertility or having a hysterectomy are found to have the condition, compared to 1 in 20 women having a sterilisation. Women with chronic abdominal or pelvic pain sometimes have the condition (1 in 6 women).

What causes endometriosis?

This is still a poorly understood condition. Several theories have been suggested. Retrograde menstruation (blood leaking into the abdomen through the fallopian tubes during periods), spread through the blood or lymphatic system, metaplastic theory dissemination (change in the nature of cells into cells similar to the lining of the womb) are some of the more popular theories put forward. It is likely that a combination of theories is the more likely answer, causing deposition of cells similar to the endometrial lining to grow and bleed with each cycle, causing scarring, adhesions and symptoms.

What are the symptoms of endometriosis?

Women may have no symptoms at all and may be first diagnosed when being investigated for some other condition or during tests to check fertility. More commonly, though women can have very painful and sometimes heavy periods, with the pain often starting several days before the onset of bleeding and lasting all the way through. Periods may start getting painful, having previously been normal. This is called congestive or secondary dysmenorrhoea. Pelvic pain, even when not having a period can be a feature. Pain and soreness after sexual intercourse (deep dyspareunia) can sometimes make couples have less frequent sex, contributing to infertility, which in itself can be the main problem. Most women should conceive within 18 months of regular intercourse. Women with endometriosis can take longer and should seek help earlier; if they already know they have the condition, The reasons for infertility in endometriosis are complex and early treatment and management is recommended, especially as women may need to be referred sooner rather than later for assisted conception.

Women may present with ovarian cysts (called chocolate cysts, because of the dark blood inside the cyst) or a pelvic mass and sometimes, with bowel or bladder symptoms. Rarely, women may present with scar tenderness or swelling or even hemoptysis (coughing up blood) or nosebleeds.

On examination, there may be non-specific pain (tenderness) in the low abdomen or pain on internal examination. Your doctor may feel a pelvic mass or rarely see bluish/blackish deposits deep in the vagina or on a scar. The womb may not be as freely mobile as normal (Restricted mobility/fixed retroversion)

Could it be confused with any other condition?

In some women, the diagnosis may be delayed because of overlap with symptoms of conditions such as Irritable bowel syndrome (IBS) or Pelvic inflammatory disease (PID).

How is it diagnosed?

Ultrasound and nowadays an MRI scan can be useful in helping to diagnose endometriosis. Ovarian chocolate cysts (endometrioma) may be seen on a pelvic ultrasound and an MRI can sometimes pick up deposits of endometriosis. An MRI pelvic scan can also pick up some cases of adenomyosis (deep internal endometriosis within the muscle of the womb), which can cause new symptoms of painful periods in women who have had children.

However, a keyhole operative procedure called a Laparoscopy is the gold standard diagnostic test for endometriosis (Grade A evidence). While this is an invasive procedure, done under a general anaesthetic, it not only confirms the diagnosis, allows thorough assessment of the pelvis, a biopsy can be to analyse the tissue and most importantly, treatment to ovarian cysts, release of scar tissue and removing the deposits to help with symptoms of pain can be all done at the same time by an experienced surgeon. A plan can be made regarding further management, especially regarding fertility options.

The American Fertility System for scoring the grade of endometriosis (Minimal, mild, moderate or severe) is useful for fertility assessment but not so helpful in assessing pain.

A blood test (CA125) may be recommended. The level may be raised but is not specific for screening or diagnosis. However, it can be quite helpful in follow up of endometriosis, after initial treatment.

Is there a genetic link?

It does appear that there may be a familial link, with members in the family suffering from this condition. It is not easy to get this history, as women used to have pregnancies much earlier in the past, which is thought to have a beneficial effect in preventing or delaying endometriosis, probably through the protective effect of progesterone (female hormone).

What are the available treatments for endometriosis?

This really depends on the age of the patient, the nature and severity of symptoms, fertility plans, previous treatment and location and severity of disease.

There are several drugs that are all equally effective in relieving pain (grade A evidence). The limiting factor is usually the side effects of the drugs. There is usually no benefit in treating infertility with medical drugs, and only delays conception. Drugs that are commonly used include the Combined Oral Contraceptive pill, Progestogens, GnRH agonists and NSAIDs such as Ibuprofen. A specialist will help you decide the right choice for you after a thorough medical assessment.

As mentioned above, it is possible and sensible to diagnose and treat endometriosis at the same time by Laparoscopy. Laparoscopic treatment and excision of lesions of endometriosis, treatment to ovarian chocolate cysts can improve fertility, relieve pain and delay further invasive treatment. A Mirena IUS may be suggested to help with symptoms, if fertility is not an immediate priority, especially if the oral pill is not tolerated. Some women may need postoperative suppressive treatment with drugs, if fertility is not needed while others may need to have further laparoscopic treatment in the future, as there is no complete cure for this condition. In some cases of severe endometriosis involving the bowel, colorectal surgeons will need to be involved along with the gynaecologist.

If a woman’s family is complete, and other conservative treatment has failed, a hysterectomy, usually with removal of ovaries may have to be considered. Hormone replacement (HRT) if needed has to be used with caution to prevent flareup.

What about complementary therapies for treating endometriosis?

Acupuncture has been known to help women with the chronic pain of endometriosis. Other therapies have not shown to be definitely helpful. A healthy diet and lifestyle is helpful, with a small number of women finding relief with dietary manipulation such as avoiding dairy products. Certain herbal products such as Evening Primrose oil and Agnus Castus may help with symptoms.

Can having endometriosis affect my chances of having a baby?

Unfortunately, women with moderate or severe endometriosis can have impaired chances of fertility. It is therefore important to seek appropriate help to allow for planning of fertility options. Laparoscopic treatment relieves pain in mild/moderate disease and fertility has shown to be improved by surgical treatment in minimal/mild disease. There is no role for medical treatment in endometriosis-associated infertility.

Where can I find out more about this condition?

Women with endometriosis may find it useful to contact patient support groups. The National Endometriosis Society can be contacted via www.endometriosis-uk.org.

Nitu Bajekal, March 2009